Day Of Mourning

Single lit candle against a dark background

Disability Day of Mourning Vigil Sites
Autistic Self Advocacy Network - February 27, 2016

I decided to do something a little different this year for the Disability Day Of Mourning. I asked myself whether at any time during the 23 or so years I worked in the Independent Living Movement I knew first-hand of a disabled person who died as a direct result of some form of disability prejudice or “ableism.”

What do I mean by dying of ableism?

I don’t mean dying because of a random, unavoidable illness, injury, or accident. I don’t mean dying "naturally" from a progressive disability. I also don't even really count dying in a risky situation that the disabled person chose to put him or herself in. A certain subset of professionals tends to focus on bad "outcomes" that could be prevented, but only by imposing unacceptable restrictions and surveillance that many disabled people deliberately reject. So when a disabled person dies free and happy, I mourn, but I don't necessarily feel there's been an injustice.

No ... In keeping with the theme of the Disability Day Of Mourning, I am talking about dying due in part to something preventable, something that didn’t have to be the way it was, a situation the disabled person tried to change, and based on prejudiced beliefs about disability itself.

I can think of at least two disabled people I knew through my ILC work who I think probably died because of systemic failures influenced by systemic or personal ableism. Neither situation was the kind where one could bring legal action, but I definitely had that feeling of, "that shouldn't have happened." Also, I don't think I ever knew or worked with anyone who was deliberately murdered, but sometimes the distinction is hard to pin down in retrospect.

The Day Of Mourning is for people with disabilities deliberately killed because of their disabilities and how their murderers perceived them. I think that's a good criteria for an event like this. However, I also think it's worth remembering disabled people who died "accidentally," but sort of not ... who died not because of who they were as disabled people, but because of the way things are for disabled people.

Weekly Reading List

Two shelves of multicolored books

Here's some of the best disability writing I read last week:

'Disabled': Just #SayTheWord
Barbara J. King, National Public Radio - February 25, 2016

It's rare to see an article, aimed mainly at a non-disabled audience, that actually explains some of the subtle, non-obvious underpinnings of disability rights and culture. This article explains why using "disability" is okay, more effectively than most pieces on the subject I have read recently.

How “Inspiration Porn” Reporting Objectifies People With Disabilities
David Perry, The Establishment - February 25, 2016

This is another outstanding explanation of another hot-button issue non-disabled people seem to have a lot of trouble understanding: "Inspiration Porn". I am thinking of starting a permanent collection of disability basics or "Disability 101" pieces to share with newbies.

If You Don't Really Mean Inclusion -- Shut the F% Up!
Danny Woodburn, Huffington Post - February 2, 2016

I'm not sure what Hollywood producers' highbrow, expensive tastes have to do with it, but I loved reading this article on the lack of disability representation in movies and TV ... especially because it's by the man who played my favorite recurring guest character on "Seinfeld," Mickey Abbott. I agree with his main point, and to me his argument is that much stronger because he played one of the best, most balanced disabled characters on TV.

Does My Vote Count?
Jenn Wolff, United Spinal Association - February 9, 2016

Well yes, all or votes count, and that's self-evident to those of us for whom politics is not just a civic responsibility, but a hobby ... something we enjoy reading and talking about. Ms. Wolff makes a good case for everyone who feels indifferent to politics and voting ... or who genuinely hate and distrust the whole process.

That Brisk Day When Cripple Oppression in America Officially Came to an End
Smart Ass Cripple - February 27, 2016

The great thing about Smart Ass Cripple is that are always at least two messages in his blog posts … an obvious one, plus one that sort of creeps up on you and occupies your mind for a few hours.

Rare Disease Day

Logo of RAREDISEASEDAY.ORG, with three colored hands radiating out with a white stick figure at their base

I see that it is Rare Disease Day again. I find that I posted something about it and my “rare disease” two years ago. What I wrote then stands up pretty well, so I’ll just go ahead and link it:

Rare Disease Day (Better Late Than Never)
Andrew Pulrang, Disability Thinking - March 1, 2014

At the end of that post I said I would read the Wikipedia page on arthrogryposis, in case there was something new for me to learn there. As it happens, I did learn a few things:

- Arthrogryposis is a more varied condition than I thought. I recognized many of the listed symptoms, but others were things I have never experienced.

- The article says that arthrogryposis may be genetic, and then says that, “The exact causes of arthrogryposis are unknown yet.” Somewhere around the mid-‘80s I was told, without much hint of doubt, that it was genetic. I don’t know whether the article is wrong or my information is out of date. The answer doesn’t make much difference to me, but I might do some further digging to find out.

- The article talks about some improvement in muscles and contractures being somewhat common as a person with arthrogryposis ages. That is certainly what happened with me, up to a point. And while I had a LOT of surgery that contributed to my mobility now, I also had the feeling back around my late teens that my feet, legs, arms, and hands didn’t really need therapy anymore to maintain their usefulness. Everyday activity seemed enough. I guess that matches up with these broader conclusions.

- There is almost nothing in the Wikipedia article about arthrogryposis and aging, which would actually be useful information at this point. That’s another thing to do some more digging for.

I am still not all that interested in arthrogryposis, but i feel like I am well past the point where not being interested is some kind of weird psychological hangup or point of pride. So that’s good, probably.

Disability Blogger Link-Up

Close up illustration of a computer keyboard, with a red wheelchair symbol on the center key

To make the links easier for visitors to browse, in the “Your name” blank, please type the title of the article you are posting. In the "Your URL" blank, paste the URL address of the item. Like this:

Name = Title of your article.
Your URL = Link to your article.

Then click the "Enter" button. That's it!

A note about multiple posts:

If you have more than one item you want to post, please feel free. However, keep in mind that these linkups open every other weekend. Plus, Two Thirds Of A Planet runs a Link-Up every other weekend. So there’s no need to post all of your best, favorite stuff all at once.

This Link-Up will close at Midnight Eastern on Sunday. The next  Disability Blogger Link-Up will start Friday, March 11, 2016.

Throwback Thursday

The time machine from the film "Time Machine"

One year ago in Disability Thinking: “Wanted: Finance Guru For The Disabled"

I still haven’t seen anyone offering practical, workable financial advice for disabled people. I’m probably reading the wrong sort of blogs. Most of what I find on the subject is about the evils of work disincentives, workplace discrimination, and the Social Security marriage penalty. One problem is that individual financial and frugality advice is often used to avoid these bigger issues, and to shame disabled people for not being savvy enough with money. The thing is, some of us may be looking for this kind of advice from an accurate, non-judgmental source.

Two years ago in Disability Thinking: “'Growing Up Fisher' Followup And A TV Idea"

I’m also still waiting for a great TV show about people trying to get out of a nursing home.

Flirting With Unwellness

Photo of red pills being spilled onto a table, along with Scrabble tiles spelling "SICK"

Don't expect much blogging this week. I'm fighting off a winter cold / flu / bronchitis. I feel like I am operating at about half capacity, and doing what I can to avoid a worse, longer bout of whatever I've got. 

If I have energy and time left over from napping, I'll probably put it into my next podcast episode, which I had planned to put out on Friday, but may not be ready until Saturday or Sunday. 

If you want to read something, browse around some old stuff in the archives, go visit the new #CripTheVote Facebook Page,  or do the #CripTheVote Disability Issues Survey.

Weekly Reading List

Illustration of two shelves of multicolored books

A selection of last week’s reading …

Workplace Disability Discrimination Claims At Record High
Shaun Heasley, Disability Scoop - February 17, 2016

Based on the quoted figures, about 22% of the disabled people who brought cases of employment discrimination saw a ruling in their favor. Whether that is a number to celebrate or not depends on your perspective. On the whole, it seems like a moderately large percentage. I say that not because I don't think there's a lot of disability-based job discrimination. I think there's actually a lot of it. However, in my experience, a lot of job misfortunes that happen to disabled people get miscategorized as discrimination. What that means, of course, is that there are a lot of disabled people who experienced bad things happening to them, many of them unfair in some way, but that don't fit the technical definition of "disability discrimination." I am most impressed that over $129 million in damages were paid out to disabled people for job discrimination they suffered. That seems like a pretty significant sum ... and a notable marker of some kind of justice being done.

Why I'm Determined to See My Child With Down Syndrome Go to Public School
Maureen Wallace, Good Housekeeping - January 31, 2016

This is another good news / bad news article. It's great to read about parents who are committed to their disabled child being educated alongside their non-disabled peers. But it's also discouraging that this commitment stands out. I may be completely wrong about this, but it seems to me like families in general are somewhat less invested in inclusion than they were ten or even twenty years ago. It seems like more of them now buy into the notion that separate, segregated schools and classes for disabled kids equals "special," "individualized", and "top notch," while they view mainstream classes as uncaring jungles to be avoided. There might be some truth in this, in a few cases, but in general, separate still ends up meaning unequal and inferior.

Pasadena sued over special education school
Adolfo Guzman-Lopez, Southern California Public Radio - February 19, 2016

Case in point, see above. Let's be clear though, this "special" school would most likely still be bad even if it wasn't using ugly and abusive disciplinary methods administered by poorly trained staff. For every genuine hell-hole school, there are dozens of well-intended special ed classes and schools, staffed by smart, compassionate teachers, that do a poor job because they are operating under a bad, discredited educational model that separates disabled kids from mainstream society and isolates them from the non-disabled peers they will be adults with later in life.

Interview: ‘Breaking Bad’s’ RJ Mitte on ‘Who’s Driving Doug'
Alfonso Espina, ScreenPicks - February 18, 2016

I've read a few interviews with R. J. Mitte now, and it feels like we are witnessing first-hand his development as an actor, and as a man with disabilities. It seems like as a professional, he sees disability representation as important, but as a person he is ambivalent about his role in actually making it happen. I am glad he's pushing against his own limits and doubts though. I have the feeling that this movie he's starring in might very easily be very cliche and ridden with dusty disability tropes. At least Mitte will give it some freshness and authenticity.

Some Reflections on the Tragedy of the Death of Thu Phan
Ken Stein, Two Thirds Of The Planet - February 16, 2016

The writer here sticks mostly to criticisms that are specific to San Francisco, but to me, Thu Phan's death triggers thoughts of a dozen near misses and less catastrophic "hits" I have experienced or known about involving cars and disabled pedestrians. In addition to better design and signaling, I think there are a couple of murkier issues of prejudice and perception worth exploring. 1) Drivers regard visibly disabled people, including but not limited to wheelchair users, as a nuisance and as somehow illegitimate intruders in "their" streets. 2) Police tend to take the drivers' side. Part of the reason I think there's driver prejudice involved is that I am a driver, and I find myself feeling irrationally hostile towards pedestrians, including disabled people, when i am out driving. Put simply, I am terrified of hitting someone, and for a moment, I turn my terror into anger and direct it towards that person in the crosswalk or rolling off the curb ramp into the street. I check myself, but the flash of anger / panic is still there. If I have trouble handling disabled pedestrians properly, I have no trouble believing others are even more loose cannons on the issue.

Weekly Wrap-Up

Illustration of a monthly calendar page

Here are this week’s posts. There's a lot of #CripTheVote stuff, and that's probably going to be the way it is until Election Day in November. I'll try not to let it take over the blog entirely.

Sunday, February 14

Weekly Wrap-Up

Monday, February 15

More #CripTheVote
Weekly Reading List

Tuesday, February 16

Thinking About Accessibility

Wednesday, February 17

Tebow's Proms

Thursday, February 18

Throwback Thursday

Friday, February 19

Podcast Preview: "The Cage / Menagerie Conundrum"
#CripTheVote Update

Saturday, February 20

#CripTheVote Issues Survey